Health Activist Writer’s Month Challenge 2012

Here’s your mission if you choose to accept it:

Read a lot more of my blog.
No, seriously.
The month of April is the HAWMC for this year for WEGO Health. That means that for every single day in the month of April, you will read at least one post from me every day!
Well, okay, you don’t have to read them every day. But I have to post them every day. If you’re a blogger, you can still join at the link above! All the cool people are doing it 😉
This blog post will self-destruct in… Wait, that’s not a Blogger feature?

Dangit.

Side note: I’m forgoing one of the prompts, meant for Sunday 4/1, to post an interview with author Carla Jones!!!!!!! Super excited!

What does an Autoimmune Arthritis cure look like?

Oftentimes, I find myself wishing I was either better or worse off health wise. Obviously, the clear choice is that I’d like to be better, to be ‘normal’ but at least if I was worse I could get disability and maybe that would help things. I find a lot of my energy disappears to work, and while my current job is 99% less stressful than my last one, eight hours of work a day is still eight hours. My body hates sitting most of that time in those horrible office chairs, especially with whatever in the world is going on with my spine lately.

I have often said that I feel as though I have an advantage in being chronically ill, having gotten sick at age 5. I can barely remember a time when I could run around and play like a crazy little kid without wiping myself out. Don’t get me wrong – I abso-f’ing-lutely hate this disease. If Arthur was real, his death would be so slow and painful and he’d probably end up looking like a Jack the Ripper victim. But I wonder, if I’m around when a cure is developed, how will that change my life?

I’ve never been normal, in health or anything else. How much of my personality is based on my illness? Is my inability to really blend in a result of the fact that my body stands out?

In any case, my weird philosophical whatevers aside, I asked a question a bit ago on what a cure for AA would look like. I didn’t get too many responses, but the ones I got really made me think.

Tiffany, CEO and founder of IAAM (who developed the term ‘Autoimmune Arthritis’ btw), offered her thoughts: “Realistically speaking a cure would be to put us into remission – so no more symptoms and you just stop wherever you are in damage.” She talked about how she misses participating in sports, and how she longs for the day when she can do so without being sent into a horrible and long flare.

Jennifer of The Feeding Edge/Art Apple a Day also shared her thoughts. Despite being in ‘medical remission’ from her AS, she still deals with flares and fibromyalgia. She very quickly points out that remission in Autoimmune Arthritis is not like it is with other diseases like cancer, where your body is completely free of disease. Like so many of us, she craves for a cure not only out of personal reasons but to benefit the hundreds of thousands of children who develop these diseases: “I’d be thrilled for a cure – in any form it appeared in.”

Heather, who commented on the initial blog post for this topic, is facing several surgeries right now as her multiple autoimmune disorders have terribly taken their toll on her body. For her, a cure means that these issues would need to be fixed. There is enough damage already caused that Heather, like so many other chronically ill people, needs a cure that doesn’t simply stop the disease, but helps to undo this damage.

Lorna shared not only her thoughts on the subject, but her husband’s too. For her, she would be happy to just have the disease stop attacking her. Like me though, she wonders how she would act and is afraid she would party too much. Her husband would love the body she had before the disease back – without the deformed bits and steroid-induced poofiness – but her personality to stay exactly how it is now, with the knowledge she’s gained from her experiences.

In all actuality, I completely agree with Tiffany. Cures for diseases don’t go back in and fix the permanent damage done. And, to be honest, the thought of being able to run around and play sports or be more active without feeling like death for it… that’s all I could ever hope for. To be honest, I don’t know how different I would be then… But I know that the pains with this disease are the worst. I could handle the damage, because shoot, athletes deal with them all the time. But the ongoing pain, the flares, and the fatigue are just too much to handle.

On the other hand though, I don’t truly know the extent of my damage myself. And wouldn’t it be wonderful to chew some ice and be normal? I may have mentioned this in my initial post on the subject, but as my disease began to get worse, my boyfriend was confident they had made a mistake and that I would be fine. I just had some weird disease that would be cured by chewing ice everyday 🙂

But, damn, like many of the people, I’d just be happy with something that eliminates the bulk of this damn disease from my life. Thanks everyone for your responses. It really is interesting to look at the range of responses here.

___

In closing here, I’d just like to reach out to another person who spoke on this issue, but wished to remain anonymous. He or she said simply said that s/he never thought s/he “could be this sad and feel so helpless and worthless this much in my entire life… but happy to be alive for my kids.”

It is really hard to handle these diseases. We often feel like we are not in control of anything in our lives. Sometimes, the only thing we feel we are in control of – and that’s debatable even at times – is whether we live or die.

I recently went through some of the toughest days I’ve ever had with my Still’s and what I think is fibromyalgia trying to pop up too. Last Monday, I was crying at work. I was in so much pain. I could barely see straight and my breathing was labored. My hands were freezing up, hurting so bad they were shaking. On top of that, whatever the fuck (sorry!) is going on with my back is getting worse, and has migrated from my lower back up to the cervical spine, neck, and also is causing intense headaches. And I get all of that lovely shit (again, sorry!) on top of my normal lower body joint pain. For a few minutes, I thought of ways I could somehow hurt myself more to get relief. Nothing too horrible, you know, just maybe crash the car on the way home… which, with my hands, could have been a possibility anyway right? Then maybe I could get real meds to treat my pain – or heck, maybe I’d end up, you know, not having anymore pain… Shortly before I left work, the pain broke along with my fever. My rash subsided. I was so grateful, but so afraid that it would start again. Crashing the car was still a thought in my mind.

That damn cliche about how it’s always darkest before dawn? Sometimes, it’s true. It’s so hard to make it through. Thankfully, I have so many friends now via social media who understand what this disease forces me to go through. If you’re dealing with these kinds of issues, please reach out to someone – even if it’s just lowly ol’ me 🙂  So many of us go through time periods like this, where we are afraid to tell other people. I didn’t even talk to the boyfriend about this, and we talk about everything. I was too ashamed to admit it to him, and honestly I don’t know what I’ll say if he brings it up after reading this other than just break down. But I can talk to others about similar issues, and it really helps.

If you have the means to, it probably wouldn’t be terrible to talk to a professional… but I hate them. I have trust issues and talking to strangers, for me, just doesn’t work. Every time I’ve tried, it just gets awkward and I can’t deal. And that’s why I write, so y’all get to be my therapists. So I guess a thank you is in order? 🙂

“Partners in Healing” – A Review

As you may know, for the next little while we will be focusing on people in our support group, the unsung heroes of the chronically ill. In keeping with this theme, I picked up a book recently designed to help our loved ones handle the pressures of the effects of illness in their lives and how they can help us the most.

If you have followed my writings and crazy rantings for a while, you might remember that I kind of have a thing for Buddhism. And I’ve also discussed a few other Shambala publications in the past, mostly relating to handling abuse and negative memories. Honestly, though, I picked this book based on description. I totally didn’t even know it was a Shambala book until I finished it.

Dr. Collinge has a background in alternative medicines, which I also didn’t know before starting the book. While it’s not a horrible thing, this explained the few chapters in the book I didn’t much care for – on things like Reiki and other healing exercises. I’m not completely discounting those therapies. There are some people that are helped by them. However, from what I have investigated on my own, they are not as viable as others can be. This includes talking with Reiki healers who tried very hard to get me involved each time we met, almost telemarketer-like. It was off-putting to say the least.

Some of my favorite sections of the book include the bits on massage and snuggling. I happen to be a very touchy person, and snuggling has a very calming and pain relieving effect on me. If it’s only a finger touch mine, that’s enough to be helpful if the intention is there.

Speaking of intention, another section I enjoyed was chapter 28 on tonglen mediation. If you don’t know tonglen, please click here and let one of my favorite authors, Pema Chodron, explain in more detail! Short version: essentially, it’s a meditation practice in which you breathe in the bad and breathe out the good. It’s sounds counter-intuitive, I know, but it is also a kind of healing energy. You breathe in the pains, worries, and sorrows of a specific person (or region or the world – that’s a little much though!), and you breathe out good thoughts, hopes, and dreams for him or her (or them!). It’s all about the intention with with you practice tonglen. Collinge notes that the idea of taking on the pain of the suffering person is a crazy overwhelming thought. Again, it’s one of those things that might not work for everyone. But I can tell you from my experience that, when someone I love is hurting, this practice really helps me slow down and realize that a) their pain is not related to me, and b) I can help the most by just being there to listen and absorb and support.

One of the things I liked the most about the book is how it touches on the importance of taking care of yourself. In a caregiver/loved one role, it is really easy to ignore your issues because sometimes it seems like the other person has more pertinent issues. You don’t want to seem like you’re trying to complain or get into a competition on who feels worse. But remember, you cannot take care of another if you don’t take care of yourself. If you spend all your time helping others, but neglect to eat right, you’re going to suffer a heart attack. And then what happens to the people you help?

Section 34, to me, is the most important section of the entire book. It talks about communication and choosing the right words when you speak. I think a lot of issues in relationships where one (or both) have a chronic illness stem from communication issues. One party is afraid to speak up, or another doesn’t know how to express frustrations.

One of the most important things in this section isn’t even a recommendation, but a list of results from a study on relationships and illness. Patients in the study seemed to respond best when their partners shared their own feelings and concerns, used humor to relieve tension, and be present in that moment and those feelings without jumping ahead to how to fix everything. Other studies point out that women with breast cancer say that they feel more connected with their partners when they express their feelings on the patient’s illness, and that they do better with partners who can empathize with them and could make it through emotional conversations. Less communication between patients and their partners surrounding illness seems to be destructive in a relationship as well.

The section goes on to talk about the bonds that are formed when those with illnesses disclose their feelings, essentially bearing what may be their most vulnerable and intimate parts/thoughts to partners. That’s probably part of why the thought of doing so is so intimidating and scary. Being a partner is about sticking through the good and the bad – if a partner doesn’t know all of the bad, don’t expect him or her to really stick around for the good. To be honest, sometimes I wonder if my boyfriend and I would still be together if I hadn’t started this blog and begun to show the weakest, most vulnerable parts of myself. It’s an ongoing process, obviously, and can’t be done overnight. There are still parts of me that I have a hard time sharing, and the same goes for him. But we work on it, and that makes it work.

In some of the following sections, Collinge makes reference to the importance of thinking positive along with your patient/partner. In doing that, it helps to appreciate the things you can do together and with each other rather than what you miss doing. If I dwell on the fact that I can’t run anymore, my pain seems to be worse. It’s just simple as that.

The rest of the book talks about ways to improve relationships centered around illness, from enjoying some good tea to running a spa like bath for your sick chick *hint hint to my handsomest blog reader*

One of the interesting things I’d like to touch on is on sleeping… separately. The boyfriend and I live in a two bedroom apartment, which sometimes gets me crap from my friends who think it’s weird. Sometimes it’s hard for me to handle too, because I SO much love to snuggle and it really helps me feel comforted, especially at night. Sometimes (like the night I’m writing this for instance!) it’s a good thing, because my energy at someone’s bed time is a little too high for sleeping. I also have a hard time hearing my alarm in the morning and then hitting snooze A LOT, which I know really can be extremely annoying… It is from the other room anyway I’m sure 🙂  Collinge actually recommends sleeping alone. It can help, especially illnesses like fibromyalgia that are heavily affected by loss of REM sleep. And it doesn’t really hurt that it limits my exposure to someone having a cold or something like that, should that happen.

Overall, I think that much of the information in this book is going to be so so helpful for partners and loved ones of ill people. I might not agree with everything in it, but even as a partner to a non-ill person (he’s so much better than normal by any means 🙂 ) I found the tips helpful and easy to relate to, just for everyday life. The biggest things to take away from the book are that communication is even more important in illness-related relationships, to try to stay positive, and that a care giver/loved one HAS HAS HAS to be able to focus on their own health as well. If you’re not there to support me on my hard journey, who is going to do it you know? Sometimes I can be distant – we all can – but I really do need you around and I so much appreciate everything that you do to help me, more than you’ll ever know.

If you’re interested in the book, use the info below to find it!

“Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness” by William Collinge, PhD. Published in 2008 by Shambala Publications, Inc. ISBN: 978-1-59030-415-0

IAAM and Awesomeness

For those of you who don’t follow me on social media, you might not know something awesome! I’ve begun the track to volunteering with IAAM, or the International Autoimmune Arthritis Movement. Right now, IAAM has been working on creating a number of awesome posters to raise awareness for the first annual WAAD, or World AA Day!

Here’s mine!

Yay, poofy sumo face!

I actually really had reservations about using my poofy face picture. I HATE looking like that, and it’s happened several times now. Once, as a young girl, it was so bad I couldn’t see out of one eye. And my sister lovingly called it ‘sumo face’ – and the name stuck. Thanks Kelsey 😉

If you haven’t heard about IAAM, please check them out! Volunteering with IAAM is an amazing feeling, and I LOVE how I’ve been able to connect with so many people so honestly about the issues facing those of us with a form of AA.

An Idea!

The boyfriend had a wonderful idea for a question to share!

I know! Pretty cool, huh?

He was thinking about a cure for autoimmune arthritis and what it would look like. What would we, as people dealing with these diseases, be okay with? Would it be a medication that stops any further damage, but halts you where you are? Would it have to reverse all damage? What if you still had tough days, but fewer of them?

In a perfect world, obviously, we all want to be completely ‘normal’ – but what would we accept?

I know I’m biased, but I thought this was such a great idea that before I wrote about it I would love to hear what others have to say too!

So! Please send me your ideas! I would love to share them, kind of blog carnival-y. If you have a blog, I’d love for you to post there and then send me a link to that entry so that I can showcase it in my response! If you don’t have a blog, feel free to start one! Oooor just email me your thoughts 😉

Oooh, but just one thing – I’d love to post this in a timely-ish fashion soooo we should set a deadline! How about I need submissions by next Sunday, March 18th, by midnight pacific whatever (savings?) time.

Thanks in advance for your input! I look forward to reading your ideas!

So lame

Welcome to a day with a huge number on the pain scale.

Felt sick last night. Had to do Humira and that didn’t help.

Today, could barely walk in the morning and rocked my cane at work, which was not easy. Hands hurt like crazy. Thinking it’s fibro and will keep track. Now ankles are hurting. Right now, at an 8 on the pain scale.

Fucking sucks.